The fact that patients even have to consider this is a shameful indictment of the way in which those with long term health conditions are being ignored

As I write this, I’m hooked up to an intraveneous drip of human immunoglobulin G (IVIG)—a blood product that helps to prevent severe infections. Without it, my immune system on its own is not strong enough to prevent life-threatening diseases like meningitis and encephalitis, or a whole host of other illnesses I’d rather not think about.

However, as Brexit drags on and the uncertainty around if, how, and when the UK is going to leave the EU continues, I’ve frequently had cause to consider whether this supply of life-saving drugs will be readily available in the near future.  The health secretary, Matt Hancock has reportedly said that he “cannot guarantee that people won’t die” in the event of a no-deal Brexit—something that I thought sounded vaguely absurd until I realised that I could be one of the people at risk of dying. On 3 April 2019, Newsnight reported that the NHS had been unable to stockpile certain drugs, risking harm to thousands of patients.

While accusations of “Project Fear” are levelled towards people who express worries about things like the supply of medicines, many people (including those working in the NHS) have voiced concerns that any form of Brexit—and a no deal Brexit in particular—could have grave consequences for patient care.  And yet, as far as I can see, the voices of patients have been largely absent from any of the debates on how we can leave the EU and maintain the quality of healthcare that citizens of one of the world’s richest countries deserve (something that both Leavers and Remainers care about a great deal).

Like much of the population, I feel Brex-hausted. I’ve tried hard for three years to pay attention to what’s going on, but it’s tiring and stressful, particularly when there is no easy resolution in sight. However, as the possible scale of the difficulties facing patients becomes clearer and clearer, I’ve often felt a rising wave of nausea in my stomach.

The products that help me ward off infection are made from imported blood (most often from the United States) that is treated and processed in Spain. There is no UK supply of blood for immunoglobulins because of the risk of transmitting Variant Creutzfeldt-Jakob disease (vCJD). There are also no facilities in the UK that are currently capable of manufacturing the types of blood plasma products that I need. Thousands of people in the UK rely on blood plasma products to survive, but apart from vague reassurances that if “everyone does what they need to do, we’ll be fine”, there is little evidence that we are ready for life after Brexit and a “no deal Brexit” in particular.

In addition to the supply of medicines, I worry about patient care and treatment. The NHS is facing huge shortages of GPs, nurses, and other healthcare professionals, and anyone who is in regular contact with the health service is already seeing the strain that this is causing. While our politicians argue about whether or not we’re better in or out of a customs union, no one seems to have a coherent plan for plugging this gap. And if we don’t have the staff we need, we certainly aren’t going to have the treatments we need delivered on time to those who need them.  

Many patients who have the means to do so are stockpiling drugs—and I don’t blame them. I’ve never felt quite as powerless as I do now, wondering what may happen if the UK faces shortages in the supplies of IVIG. The last time I got ill, I spent a month in the hospital and four months recovering at home—and I still suffer the consequences of that meningitis infection to this day. The thought of being even slightly more at risk of that happening again makes me panic.

I’m a dual citizen UK/Canadian citizen and over the last six months have wondered many times if I could go back to Canada and beg for treatment (I’m not entitled to free healthcare in Canada because I live and pay taxes here). Could I go to Spain and purchase some IVIG there? And even if, in theory, I could go somewhere to buy my treatment, I’m not sure how I could afford it (my treatment costs thousands of pounds per month). The fact that I’ve even had to consider this is a shameful indictment of the way in which ordinary people, and particularly those with long-term health conditions, are being ignored in this debate, the outcomes of which could have significant and devastating consequences.

Living with a long-term health condition is stressful on its own. Constant medication, the worry about symptoms of treatment and the condition itself, and the management of side-effects, frequently contribute to a life ridden with anxieties that the average, healthy person knows nothing about. Living with a long-term condition when it’s not clear that the medicine that keeps you healthy will be available from one month to the next is downright terrifying.

Ceinwen Giles is a director at Shine Cancer Support and a trustee of the Point of Care Foundation.

Competing interests: See a declaration of interests on bmj.com